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So worried about ds (poss aspergers/NVLD) and school

(16 Posts)
Pooka Thu 04-Oct-12 10:19:30

Right. Deep breath. Have been shoving putting this out there to the back of my mind because typing makes it real. But after yet another completely horrible drop off I'm in pieces.

I'm at the end of my tether. I just don't know what to do for the best.

Ds1 is 7. He's a lovely boy. Always been a bit quirky. Very bright. Has massive problems with friendship and social issues at school. Academically is ace at reading and verbal stuff. Does some literacy with year 5, but is in year 2 most of time. He ececelltn reception year, lovely teacher and lots of adult attention because of staffing boost in reception. Disasterous year 1. Mixture of gradual onset of friendship issues alongside teachers who didn't really seem to like or get him. Ended up getting so upset and sad (to extent that teacher asked whether there were problems at home) that we paid for private ed psych who did wisc tests and spent lots of time with him. SHe says that he has massive disparity between non verbal and verbal abilities, clinical difference, and that some of his behaviour were pointing towards aspergers. Also has very slow processing speed (comparatively).

School took some recommendations on board. We pretty much wrote off that year, hoping that with new teacher, new year, the school might be able to help more. He's supposed to be being seen by the borough specialist at the end of this month. But I'm convinced that that what will be said is that he's only slightly 'spectrummy' and because he conforms and is not disruptive I think there is not a hope in hell that he will get any extra help with coping with socialising and friendships.

Getting him into school has got increasingly more difficult. Today I spent quite. Lot of time coaxing him out from behind trees and cars, while he was sobbing and saying he didn't want to go. He was embarrassed by friends seeing him crying. I told the TA that he was upset and explained why I think that was (bit of a disastrous play date yesterday plus he's just fed up with the whole school thing). I know that at the end of the day they will say that he seemed fine. I think he goes into shutdown robot mode when he's in the classroom. Immobile face, stiff upper lip. With makes them think he's fine. But he isn't and this is just making me well up typing.

I don't know what to do. I want him here with me. Dd loves school and is in year 5. Also have a 3 year old. Just rang dh to vent and dh is adamant that he needs to be in school in order to learn how to socialise. But I'm increasingly thinking that this is just misery and hell and why am I bothering? He isn't really learning much that he doesn't already know (though his handwriting he improved heaps n he last 4 weeks). He likes his teachers. He likes the other kids. But he finds it worrying and upsetting that he isn't "popular" (his current big thing) and that they change the rules in games.

I don't know whether I'm blowing it all put of proportion and that actually he is ok and school is doing him good and everything because written down, his reasons for not liking school (rule changes, not being popular and being tired) aren't that enormous. He's not beng bullied or mistreated. He just seems lacklustre and deflated. But then there are flashes of excitement when he gets together with a couple of boys and comes up with excellent game and all goes swimmingly, until they change the game.

I don't know what I'm expecting people to say really. I was wondering whether anyone reckons I sould talk to the head teacher? The senco is lovely but very very busy. Have talked in past to senco, class teachers (job share), TA and year 5 teacher who does guided reading with him. But it seems that none of them really talk to each other (or rather that they probably do, but there are so many much bigger fish to try wrt SEN at the school that ds1 who Is quiet and bright isn't worried about. Should I take him out of school? Go back to our ed psych? Go to gp? Take him out f school?

Aaa argh.

Sorry is so long. Cathartic. smile

Pooka Thu 04-Oct-12 10:25:15

Apologies again for the length. I sound like a right whinger.

Has actually perversely cheered my up just putting it down in writing.

Dh's solution is that he will take over drop offs (though would work late to compensate). I don't want that though - I want to be with dcs in morning, happy or otherwise. He is great (dh) but speaks in terms of flipping a switch in ds1's brain, finding a solution that makes him happy to go into school. I may be being doom ish but I'm not sure (increasingly) that such a switch exists.

TirednessKills Thu 04-Oct-12 10:57:54

Message withdrawn at poster's request.

AttilaTheMeerkat Thu 04-Oct-12 11:00:06

You do not sound like a right whinger!!!.

I would ask your GP to refer your son to a developmental paediatrician asap because these people can properly diagnose. Its nmot going to be a quick process and diagnosis takes time. Ed Pysch and the like can only make recommendations re educational needs; they cannot diagnose anything like ASD for instance.

Has no-one ever suggested that you apply for a statement?. Is he not even on the SENCO's radar?.

I would also think longer term; secondary school is not all that many years away either. How is he going to manage at secondary school without any additional support in place?. Clearly he will not as things are, he clearly needs more support in school. I would also speak to the SENCO and inform this person that you are now going to apply for a statement from your LEA to try and get some more support in as clearly what is happening now is showing you that his needs are simply not being met in school. He is being failed as a result. This is also evident by his behaviour before and after school; many children who do not get their additional needs met at school very often do similar to what your son is currently doing.

You are truly his best - and only - advocate here. Be the strongest advocate you can be for him because you and his Dad can get him heard.

IPSEA's website is good at the whole statementing process and has lots of information on it. I would also look at the SEN Code of Practice - this is online.

merlincat Thu 04-Oct-12 11:15:36

Message withdrawn at poster's request.

DaveMccave Thu 04-Oct-12 11:20:09

I think he would benefit from home schooling massively. Can you get your DH to read Education otherwise website? Especially the other parents stories etc

Rochellemaria Thu 04-Oct-12 11:53:34

I would second getting a diagnosis and then you can access the correct support.This really is the first step and then at least you know what you are dealing with.You will also be in a better position to adequately home educate if that is the route you have to take.Good lucksmile.

Pooka Thu 04-Oct-12 12:35:32

Thanks for all your input.

I think I'm just feeling very powerless at the moment.

There is (IMO) no way that he will qualify for a statement. I have friends at the school ith children with diagnosis and SEN that involve academic attainment stalling and more disruptive behaviour who have been told that they are unlikely to get statements.

Ds1 is on school action while he is being monitored apparently. The senco has smaller group social work arranged but for kids on school action plus. I think it's unlikely even tht he will be classed as needing SAplus - in the classroom he is above average in all subjects (apart from having dodgy handwriting) and he conforms and is compliant. Both of which are very depressing words.

Personally I think that he needs more time with adults in classroom, more attention and also to attend the social skills groups. But even with this I think school may not suit him.

The difficulty is that dh is very much of the opinion that he can only learn social skills by being exposed to school. I think, naively, thative been thinking that secondary school will suit him much better - a larger pool of children to choose friendships from and more opportunity for academic differentiation. I think I'm coming to the conclusion that this might not be the case, and anyway, the idea of nearly another 5 years of him at best tolerating school is heartbreaking. So the way I feel right now I'd pull him out of school in a heartbeat. I just don't want to make things worse for him (by isolating him or accentuating differences).

I think my plan of action is to let the borough ed psych assess him (think should be happening within next 2 weeks - all senco could say is that he's on w long list of kids to be seen that day). What happens then is he can make a referral to developmental paediatrician. If he does, then that's good. If he doesn't feel ds warrants it, then I will take ds to gp to try and get referral that way. In the meantime I can email our private ed psych for advice.

I will talk to ds's teacher and emphasise that I'm increasingly concerned that they are telling me that 'he's fine' during day - because this means tht either they are not noticing he has frozen, or that he isn't -in which case why is he so very unhappy in the morning? Am convinced that they think I'm dramatising situation or being neurotic. Thankfully though, have older dd and I think that her teachers would vouch for me not being overdramatic bundle of neuroses. unfortunately senco and current teachers haven't taught her in past.

moosemama Thu 04-Oct-12 13:44:18

Pooka, almost everyone on here has been told at least once, if not over and over, that their child won't get a statement - me included.

Your ds sounds very similar to mine at that age. We/he muddled through infants, raised our concerns regularly but were told the school saw no problems and we wasn't even on the SEN register. Unfortunately, he went to pieces when he entered juniors, even though it was the same school, same teachers, same rules etc. He couldn't cope with higher expectations on him in terms of self-reliance and organisation etc or the shift in social/peer group friendships and interaction.

Ds was referred to a Paediatrician by our GP when he was 7 and was diagnosed with Asperger's Syndrome when he was 8.

Apparently it's very common for high functioning children to end up with late diagnoses and the transition from infants to junior is one of the most common times for things to come to a head.

My ds is also has handwriting issues, but is in top set for everything, so doesn't have achievement issues, although we have eventually been able to get the school to admit that he still isn't achieving his potential despite being near the top of his year.

I applied for Statutory Assessment myself, in spite of what the SENCO and others etc told me about there being no chance of him getting a statement. He got Statutory Assessment and then a Statement on our first application, with no problem at all. The Ed Psych, Inclusion Team and Paediatrician all agreed what sort of support he needs to achieve his potential.

We still have issues with certain teachers refusing to agree that he has AS and needs additional support, even with his diagnosis, which has been confirmed many times over by different professionals. Plenty of staff at the school think I am the problem and that ds is fine, but they are wrong, not to mention extremely arrogant for thinking they know better than a team of 9 professionals. angry The thing is, we now have a statutory document, the statement, that tells them they have no choice but to give him the support it sets out, so it doesn't matter what individual teachers might think, as the support has to be given regardless.

Personally, I would go to the GP now rather than waiting for an EP assessment. As Attila said, the EP can't diagnose, so their assessment will just be an extra step and delay in getting your ds a diagnosis (if appropriate) and the necessary support to cope with school. EP assessments have their place, but they aren't a substitute for a full assessment of his needs and issues. Our EP has been amazing, really good at getting to the root of ds's issues and needs and active in making sure the school meets them.

If it helps, my ds is now 10, in year 6. Since being diagnosed and getting appropriate support he has gone from an anxious, school-refuser who we very nearly pulled out of school to home-school, to actively getting upset if he has to have a day of due to illness. He loves school now, is doing much better socially and is happier all round.

I was very relieved to get the statement first time, as we were running short of time to make sure he got one before starting secondary and the process takes a very long time. We still have some problems with the school and getting the some aspects of the statement implemented is proving to be a bumpy ride, but it was still well worth fighting for.

Pooka Thu 04-Oct-12 14:09:28

Oh goodness moosemama. Thanks so much for inspiring post.

When it came to going to the GP, did you take your ds with you? It probably sounds ridiculous, but I really feel ncomfrotable talking about ds in front of him. He hates being talked about, hates it if I tell anyone anything that he's done, even if it's something positive, unless is someone he feels comfortable with. Also he is generally pretty good in terms of interaction with adults and I suppose I wonder whether this will make gp unlikely to refer.

The school senco mentioned GP as an option at the end of last term, but asked if we would wait for the borough ed psych. Foolishly I agreed. Not sure why they were keen for me to wait. Haven't really pondered whether they have/had an agenda.

Pooka Thu 04-Oct-12 14:16:09

Out of interest, and of course if you'd rather not say, that's absolutely fine, but what kind of support does your ds get? Part of my problem is not knowing what help might actually make a difference. And I've pretty much bought the line that the school has such limited resources that anything that costs money is going to be baulked at. Complicating factor is that the school may be applying to be an academy at some point in the future and I wonder whether that will effect ds and any additional provision.

moosemama Thu 04-Oct-12 14:19:18

Dh and I went to the GP without ds the first time and then took him back for a second appointment, where she just had a chat with him.

My ds also interacts better with adults than peers, in fact right from nursery he would seek out teachers and other members of staff rather than his classmates at breaktimes etc. He can have incredibly grown-up conversations about all sorts of different topics and hold his own talking to all sorts of different adults, but can't explain his feelings or anxieties or adequately explain an incident that happened, say, at playtime that upset him and/or why he is upset.

If you aren't comfortable talking about him while he's there, I would recommend either an appointment without him or perhaps a telephone consultation in the first instance.

I would do both by the way. Go ahead with the Ed Psych appointment and speak to your GP, then you have more than one string to your bow - so to speak. You don't have to wait to speak to your GP just because the school want you to and I can't really see why they would want that anyway, as the sooner they identify his needs and/or diagnosis the sooner he can get the support he needs.

Mcewan07 Thu 04-Oct-12 14:29:38

I will start of by saying if you want to chat feel free to message me , and that i think the quicker you start the process of getting a diagnosis the better.

I will not go into a full blown post as i am about to do a separate one of my own, but it was your post that helped me find this site.

Yesterday i finally (after a year) got a diagnosis that my son ( who is 7 and a half) has aspergers. It has been a long hard journey to get here.

He has trashed the classroom numerous times, hurt the teachers, scared and hurt the pupils, battered me several times, been brough home after getting battered and the list goes on.

Yesterday was a very bad day for me, one of the things being that he is now banned from the school bus, luckily thanks to the diagnosis the headteacher is hoping that he can get a taxi put in place for him.

I originally went to the gp and took my son with me, which both had positives and negatives. I found it good that the doctor could see and talk to him, but john (son) often would repeat what he had heard my husband and i talk about rather than say how he was feeling. he was usually on good behaviour and i thought the doctor wouldn't want to put in the request.
(not fond of my doctor on the best of days) but it took several months for him to send of the request) as he kept saying he needed the schools reports, but finally it was sent.

It is just over the last month we actually got our appointments, the first was a discussion with just the consultant husband and myself which was good and in depth for over 2 hours of answering questions. Then yesterday they saw john for an hour before we got the confirmation.

John has been involved with the ed psych for a while but i do not like her much. (although i guess it helps strength the claim if they can write reports) however if the process takes as long in your area as it did in mine i would start the process and hopefully the ed will be involved soon to get her opinion.

(SO much for the short version)
Take care

moosemama Thu 04-Oct-12 14:32:04

Most of ds's help is with social and communication skills, plus emotional literacy, understanding his own feelings and learning to handle them appropriately.

He get's assistance with organising himself and his equipment (remembering homework etc) and has access to ICT equipment for longer pieces of writing due to his handwriting issues, as he simply can't produce enough, readable/assessable classwork for them to asses him on if he has to handwrite everything.

His statement also includes extra support with classwork that requires good Theory of Mind, understanding of inference etc and getting to grips with character referencing and character motivation in literacy etc.

He gets help with using a ruler, scissors and other mathematical/scientific equipment.

He doesn't have a 1:1 TA. He has a 'mentor' who he is supposed to see at strategic points of the day to help with his organisational skills and to deal with any anxieties or problems that arise throughout the day (although the frequency of her support is something the school aren't complying with the statement on at present).

He also has four designated staff members, all of whom he is comfortable with, that he can approach to deal with anxiety type issues. This is because once he gets worried/anxious he can't move on from it until the problem has been suitably addressed and this effectively leaves him unable to access learning in the meantime.

Finally, he currently has 1:1 support once a week from an ASD inclusion teacher. He has has that for about 18 months now, but it will end shortly due to her team being massively overstretched and ds having made such a lot of progress.

We also got thrown the line about lack of funds by the SENCO, but that's not your problem. If they haven't enough funds from within their SEN budget to provide for his needs, they should apply for a statement to bring in the extra funding they need to cover his support.

School also told me ds's statement came with no funding - which was a flat-out lie, it comes with a substantial enough sum to cover what they are doing to implement the statement and then some. (Although they are still resistant to implementing some of it and pretending it's for ds's benefit rather than down to their resources - but we are fighting that and they won't get away with it.)

Ds's school is also about to become an academy and the secondary he will be going to is also one. This should make absolutely no difference to pupils who need additional support, but if you are concerned, then applying for a statement would be the way to make sure the money is there to ensure his needs are met.

Pooka Thu 04-Oct-12 23:21:21

I wanted to thank you all so much for shoulder to cry on!

Good luck with everything mcewan7.

There's heaps to absorb and ponder.

Teacher said that he was fine today. Smiling and contributing in all areas of the lessons. She checked up on him at each playtime and he told her what he'd been playing.

She mentioned gp. I'd already rung earlier anyway and had confirmation that the gp would be happy to see me without ds in the first instance if I was concerned about making ds uncomfortable.

Leaving school I chatted with ds about the morning issues going into school each day. He said that he didn't know why he was upset, but that he was. Bless hm, he said sorry (unprompted - I hadn't said I was upset) and gave me a hug. He is just such a contradiction. There are things he really gets, when he thinks about it and understands. But he's so out of his depth in other ways.

I think I will gauge his mood in the next few days - remembering also that is end of week and our ed psych emphasised that the processing issues might make him dead tired onwards the end of the week and end of chunk of weeks at school. If I don't think I can wait until the borough ed psych sees him i will go to gp. If the borough guy hasn't anything really to offer, I'll go to the gp anyway. And in the meantime I'm going to read up on homeschooling just in case things deteriorate. Dh was interested in a blog I found that was about a child that was so similar to ds who had aspergers/NVLD and was deregistered. It's always an option, and it's good to have options.

Am feeling more positive in some respects, but also concerned that all the issues with breaking down and being upset are happening out of school - as if the school are going to assume its a home problem rather than a school issue, or that I'm an overdramatic precious and neurotic pushy mother. I think that I'm just going to have to grow a pair and stop being so worried about the school liking me - because that doesn't really matter if ds is unhappy.

AttilaTheMeerkat Fri 05-Oct-12 07:18:46

"I think that I'm just going to have to grow a pair and stop being so worried about the school liking me - because that doesn't really matter if ds is unhappy".

Correct Pooka.

You are your child's best - and only - advocate here.

Also Pooka if I had £1 for every time people like you have been told that their child would not get a statement I'd have enough for an airline ticket to New York!.

He is likely breaking down and being upset out of school and or taking it out on you befcause it is safe to do so. Many children whose additional needs are not met in school act very similarly. Your son is currently being failed by his school because they are not meeting his needs.

Ignore the naysayers and seek answers for your son asap. Get the GP to refer you to the developmental paed (do not rely on EP to do it as he likely will not and your own process re going to the GP will be quicker) and tell school as well that you are going to apply for a statement as well. Watch them go pale!.

Forget supposed funding issues as well - that is not your problem to involve yourself with.

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